Being the makers of our future

One of the hardest parts about being a parent of a boy with Duchenne is worrying about how the changes and hardships will affect our son emotionally.  Just like any other parent, my primary goal is to ensure the happiness of my children.  As the years go by, I understand that my fears are just that – my fears.  I look at his disorder from the perspective of a healthy adult who has lived half of her life already.  It is impossible to imagine my life as a handicapped individual.

Matthew is not yet handicapped, and God willing, he may never bear that title.  He has, however, in his short life, endured a number of difficulties, treatments and limitations.  The fact is that he has navigated all of these experiences beautifully because they were his alone and a child has the benefit of owning who he is much easier than an adult can, in most cases.  

Duchenne will always be a part of who he is, but that is not necessarily a tragedy.

 

The keynote speech by Luca Buccella at the PPMD Annual Conference this summer illustrates this point beautifully.  As an adult with Duchenne, who has endured many of the changes that DMD brings, he still has a positive outlook on life and his purpose in life.  For me, his words are soothing and healing because they resonate hope and strength for our boy and our family. I share them with you:

Hello everybody, my name is Luca Buccella, I am twenty-one, and I'm here to tell all the boys with DMD and their parents, that a future is there. And I can say that honestly, because the future that I started planning when I was eight has now become my present. To tell everybody that even the "less fortunate" can have a full life.

In many charity campaigns - at least in Italy, I don't know if it's the same in the United States - we hear the expression "less fortunate than us" referring to disabled people. Well, I feel I'm fortunate, or lucky, in many fields. And then, is there such a thing as fortune? Actually, fortune is useless without a strong will. But with your will, fortune becomes mere clay, that you can reshape and transform with your bare hands, just as you wish.

We must be the first to consider ourselves as the normal people we are: the revolution must start within us. But it's not because of our disability that we must take things for granted: we must earn our chances, nothing's free, we have the same rights and duties of every other human being.

Our bodies are handicapped, not our souls: DMD doesn't determine the people we are, it doesn't make us better or worse than anyone else. But it's a part of ourselves that we must learn to live with. It doesn't represent what we are, but it may be considered as a friend, sometimes annoying, with whom we must learn to coexist despite the fights. It's not a part of ourselves, but it compenetrates us, and, if lived positively, can even make us better people.

Just remember that it's not the disease that makes us better, but the way we face it. We must never think that our disability makes us better than others, or even special. We are unique, but that's just like every other human being. We don't want to be seen as pure spirits, light bearers with our soul tempered by years of sacrifices: our disease doesn't determine our future, we have to do it. We can be anything we want to be, if we convince ourselves. And to become the people we want to be, it is essential to start planning our future.

And on this specific aspect, I'd like to address myself particularly to parents. You are the first who must raise your children giving them a certainty that a future does exist, and so it must be planned and considered. Because just like everyone else on planet Earth, since the very beginning you must start to build the foundations on which to construct your future.

I've seen far to many people giving up, thinking there was no future for their kids, that they would never reach a certain age. But I believe that this is something you can say for any individual, because no one has the certainty of what's going to happen tomorrow. Abandoning every hope, convinced that there is no future for DMD patients, would be like stopping to drink and eat, because eventually life is going to end and nothing can change that. Whereas life must be planned, dreams must be pursued, and human relations must be cherished, no matter what. Because otherwise, at the age of twenty, you find yourself with no passions, no interests, no love: and so, you don't have a present.

I owe my parents the fact that I've never felt different: so, as they did, allow your children to take risks, to fail sometimes, to savour life in every aspect good or bad. You'll see the results, and your kids will be grateful. Just remember that first we must realize that we're normal and we can have a full life, than we can show it to the world. You cannot live your life hoping in a miracle, in a prodigious remedy that is going to fix everything.

In this last few years, research has taken a giant leap forward, trials on men has started, showing that maybe a cure is not so far away. But what would happen if you spent your whole life just waiting for a cure that will finally allow you to live what society calls "a normal life", it the treatment doesn't reach you in good time? You would have lost a life just waiting, not living. You must become aware of the fact that you can live a full, happy, satisfactory and meaningful life, that maybe the our disease isn't all bad after all.

We must try and embrace our condition, and then we can start to see upsides. Believe me, they are just as many as the downsides. As my friend Pat Moeschen likes to say "Membership has its privileges". And so, we have reserved parking, we don't have to queue at amusement parks, movie tickets are less expensive. In my country, people think twice before insulting you to your face. And if they do so, we can "wheel" them down! And, in a relationship, a disabled person has the absolute certainty that the person with whom he's involved, really loves him for what he is.

Once we have learned that our disability it's not an obstacle in the pursuit of happiness, if the cure were to arrive, it would still be great. But if this weren't happen, it would not be a problem. Because we had understood that we are, and always be, the makers of our future.

Allison Wood Greiner is a high school French teacher, a founding member of Inspired Wining, and mother to three children, including Matthew, who has Duchenne Muscular Dystrophy. 

Smelly sneakers mean a boy's had a good time!

Last week was the best week!  I was in town every day (no business travel) . Our kids were at "grandparent camp," thus the house was clean and quiet. My husband and I actually had 3 date nights. We got to celebrate July 4^th! And, Wednesday Night Whine provided the much needed dose girl and wine time.

Best yet, our kids were having just as much fun as we were. One child was the beach with Scott’s family. And, the other was the mountains with mine. We'd planned a big switch midweek.  

My husband and I enjoyed the nightly updates from each set of grandparents. But, this one in particular made me laugh. While I was Wednesday Night Whining, our son Foster was putt-putting, hitting on girls and stinking up the house. Please read this email update from my dad. I think he has a knack for writing. Perhaps we can convince him to guest blog on Inspired Wining one day!

"Yesterday was a full day and Foster had a great time. First, Foster, Emma and I went to the Inn’s back yard for some baseball, where he hit a home run over the trees (and lost the ball). Then we all went to Mountain Miniature Golf where he scored a 435, not counting Mulligans (all 124 of them). Just kidding, of course, but his math needs some work. Let’s see 3 balls in row off the tee and into the water and then 3 more putts to sink it for a “3”.  Hmmm. 

  

Freedigitalphotos.net

We then went to Jacob’s Ladder Falls with all the Miller kids for a creek walk and a Who-Can-Catch-the-Biggest-Minnow Contest. Girls rule, boys drool!  

Foster paired up with Jake and they really enjoyed the fishing and swimming as the temps approached 80 degrees here in the High Country.

The Millers came back to our house to watch Surf’s Up and Foster took a 1½ hour nap. Fully rested, then it was on to the picnic at the Inn and fireworks.  

Foster hooked up . . . well that’s not the right word today . . . played football with 2 cute, slightly older girls and 2 other boys. Why Foster insisted on shadowing one girl and trying to tackle her whenever she got the ball is beyond me. J

Then the fireworks, without a doubt, the best ever at the Inn. He covered his ears the whole time, but seemed to really enjoy them. 

Going on 10PM, you’d think the day was full enough, but we topped it off with a few WalMart fireworks at the Millers. Then we finally headed to bed, stopping in the bathroom to clean up and wash feet. Foster took off his shoes and everyone keeled over!  I think we’re going to incinerate his tennis shoes today in a sacrificial fire that will surely ward off the deer that keep eating Jennie’s flower and the bear that eats her compost."

Tiffany Crenshaw is a  North Carolina native, wife, mother of 2 wild and crazy kids, and an entrepreneur. She loves her family, a delicious glass of red wine, girl time and the occasional spa treatment. As an enthusiastic member of Wednesday Night Whine, she rarely misses a “meeting” unless she’s traveling for business. She is the President and CEO of Intellect Resources, a recruiting and consulting firm specializing in the healthcare IT industry.  

Are we "airbrushing reality" when we say women can have it all?

In April, I published a post entitled “I’ve had it with being too busy. Who’s with me?” 

Turns out, a lot of you are. A lively commentary ensued with the majority of readers commiserating.

While productivity certainly has its rewards, being overly busy gives us the sense that we are missing something. It knocks us off balance.  I’ve long felt that “balance” is elusive.  We may think we’re pulling it off, but are we consistently engaging with people and projects in the way that we desire and that makes our experiences meaningful? “Harmonizing” our lives, as Sheila Moeschen of HerSelf First puts it, feels more attainable, healthier. The problem is that career, family and personal harmony is only as possible as our society will allow.

I promised a follow-up to my earlier blog. Today I bring that to you in the form of what will likely be a controversial statement, a statement that goes against everything you’ve heard for the past several decades. Are you ready? Here goes:

Women CAN’T have it all.

I have a friend who routinely says this to me. At first, I disagreed, like many of you possibly.  But over time, I’ve come to realize that there is some truth in her statement.

My friend’s view is that today’s generation of women has been fed a fallacy since girlhood. 

Whether it’s come from society or a tampon commercial or your own mother, throughout your lifetime, you’ve probably heard the phrase, “Women can have it all.” And if your mother told you this, believe me, she meant well. She was excited that you would have more opportunities than she did. She was proud to see you become a career woman AND a mother AND a wife AND a volunteer…AND AND AND.  Indeed, these are wonderful freedoms and roles for which I am deeply grateful.

Where, then, is the fallacy? 

What none of us factored in was that while we’ve made it impressively clear that we can DO it all, that does not mean that we are doing it all WELL. Not all at the same time, at least. And when we don’t do it all well, we blame ourselves for not being a more productive employee, a more involved parent, a better housekeeper, etc.

In her recent piece in the Atlantic, Anne-Marie Slaughter calls the women-can-have-it-all mentality “airbrushing reality.”

When you feel “too busy,” do you also feel that you’re not being true to yourself? During a given week, how often do you feel you are reflecting your true self (your full potential, your most meaningful contributions) in ALL of your roles – wife, mother, professional, volunteer, CEO of the Home, etc. Can you relate the notion of an airbrushed reality?

I’m not saying women can’t have a lot. And maybe we CAN have it all. But are we engaged in each of our roles at a level that enriches our experiences and elevates our contributions? 

I can imagine a number of ways to mitigate the downsides of women being able to have it all, and they all center on taking more control over our schedules. I’m fortunate to have a job that allows me to work largely from home so that I can be with my children. While that can create a whole different kind of craziness, at least it increases my choices in the pursuit of harmony.

But as Slaughter illustrates in her article, it’s not up to us alone to find ways to control our schedules. There is a much greater force at play; more American businesses and organizations must make a shift that puts focus on “how we can help all Americans have healthy, happy, productive lives, valuing the people they love as much as the success they seek.”

Until then, I’m advocating for quality over quantity in our lives. It’s a step in the right direction. Say “no” when you need to; say “yes” when you want to. Trust your gut. Know when you are doing yourself – or the very thing to which you are committing your time and energy – a disservice because you are unable to fully engage. Give all of yourself to only a few things at a time. And make sure that your own health and sanity is one of those things.

Inspired Wining is an example of where I've gotten it just right. Take a close-knit group of women. Add a monthly gathering over wine. And top it off with the most significant service projects of my life – fighting a disease that is threatening my friend’s family while starting a movement among communities of women to find their own special group and cause. That’s how I’ve been able to capture a quality experience.

So, how about you? Do you think women (and even men, as Slaughter points out) can have it all? I invite you to read Slaughter’s article, if not in one sitting, then over time. I think you will find it a quality read as you ponder your own quality time. And by all means, please leave your comments. I’d love to hear from you. 

Spontaneous Euro-Bungy

Ever have  occasions  that you are delighted you were spontaneous? Last week, I had one. After relentless requests from our 6-year-old daughter,  we allowed her to jump in the middle of a mall food court with a "Euro Bungy." 

Ridiculous!!!! Who does this??

Here's the deal. Charlotte was secured with a harness between her legs and had bungee cords attached to either sides of her hips. The technician then had her jump on a trampoline and raised the cords so that she would ascend 20-25 feet in the air. 

As Charlotte became more comfortable, she figured out how to jump high enough to flip around. Within minutes, she was jumping 25 feet in the air and completing double somersaults. It was amazing how quickly she learned. It was truly a "HOLY COW!" moment.

As I sat there watching, I realized I had no clue who these people where hoisting Charlotte into the air, nor did I have any knowledge of the equipment, nor did I sign any form  that was considered a legal consent/waiver. When does this ever happen?

Because we were SPONTANEOUS, there were no directions or "pros vs. cons" conversations. Charlotte took a risk and you know what? She had a blast!

It was a great lesson for me as a parent and a person. Yes, we should be sensible and smart with our decisions. However, sometimes it just pays to take risks, live a little, and trust that things are going to be okay.

  

So my challenge to you this summer-----take some risks, get uncomfortable, and be SPONTANEOUS!!

Alexis Williams may not be a good housekeeper and she’s even worse at being the tooth fairy. But she loves laughing, traveling, spending time with family and being a part of a community that makes a difference. Alexis is officially Inspired Wining's “go-to girl” for just about everything from developing community partnerships to securing our venues for Inspired Wining on Location events. A wife, mother of 3, a church and school volunteer, Alexis is the sharp-witted sweetheart of the group.

Summertime surrender

“I do not save time, I spend it. Time is the one thing you cannot save. Time is spent without even trying. Don't save time, use the time that you have wisely.” –Danielle Bath, caregiver and mother of three.   

Sixty seconds is all it takes to recharge, get an energy boost, or mentally, emotionally, and physically repair. At HerSelf First, “Make Friends with Time” is one of our Four Ingredients for Harmony, the four essential principles all moms/women/caregivers need to sustain their long-term wellbeing. As such, we created My Minute, a regular tip segment that offers easy ways to make your daily minutes work for you. The last thing anyone needs in our busy, over-scheduled, overly plugged-in lives are tasks added to our days. My Minute reinforces a model of working with the given time we all have over the course of the day to, ultimately, broker a new relationship to time that helps us to nurture and enhance our wellbeing.    


This week’s My Minute: Summertime Surrender  

Summertime is a season when schedules shift, priorities adjust, and the world literally seems a bit lighter. Yet many of us insist on plowing through these lackadaisical months at our usual break-neck pace, and before we know it the leaves are tinged with orange and the familiar rush and hurry routines of our busy lives are back in play. Why not try a different approach? This season, surrender to the natural rhythms and cues of summertime to recoup your energy, reengage with your friends and family, and reinvest in your well-being.


Play in the Rays: For those of us who would mainline that sunshiny Vitamin D if possible, the longer daylight hours are definitely a plus. Take advantage of those precious post-five-o’clock-punch-out rays by serving dinner in the backyard, patio or deck. Leave the laundry folding and other chores. Kick off your shoes and get outside.

Photo courtesy of S. Moeschen

Get in the Kiddie Pool: Not literally, or, o.k. maybe, go for it! By this, I mean, take a cue about summertime surrender from your kids. For them, every day is a blank canvas rife with endless possibilities. Play more, laugh a lot, be silly, take naps, have ice cream for lunch, spend more time simply spending time.


Lighten Up!: Everything about summer—longer, hotter days, lush blooms, leafy trees, lulling water scapes, open-toed shoes and lighter clothing—screams at us: “Slow down! Relax! Lighten Up! for Pete’s sake! Let’s not make her yell at us so much; lie on the grass, laze in the pool, ditch the sandals and walk barefoot on the beach. Surrender to summer.


About Dr. Sheila C. Moeschen, PhD. Sheila Moeschen is the Director of HerSelf First, a program sponsored by Parent Project Muscular Dystrophy that helps caregivers invest in their wellbeing on a regular basis. She holds an Interdisciplinary PhD. in Theatre & Gender Studies from Northwestern University. Her research and writing has appeared in Women’s Studies Journal, Disability Studies Quarterly, and The Huffington Post. She resides in Boston.